Support needed for long overdue major GI Surgery!

Hey everyone!

So, it’s that time again: I’ve got yet another major GI surgery coming up and I’m going to need to ask for help getting it done.

Presumably if you know me you’ve got a pretty good idea of the situation but I’ll try to give as brief an update as possible first and then give a longer update below—needless to say, this is surgery that is long, long overdue and should have a significant positive effect on my quality of life!

The short version is: I need to have the remainder of my colon as well as my rectum and anus removed at MSKCC, hopefully this summer. All of the tissue has shown precancerous changes, and the remaining large intestinal tissue is incredibly inflamed, causing daily cramping and bleeding as well as causing auto-immune sores to begin appearing on adjacent areas of my skin. After the main procedure, a reconstructive surgeon will be called in to close up the significant wound created by the removal; all told it should be in the range of 4-6 hours in the OR.

I am very confident in my ability to navigate the situation as well as the skills of my team and the facilities at MSK., but I have been told to expect an extensive recovery, and any major surgery brings up emotional trauma. My mom especially has had a number of very harrowing experiences awaiting updates on my status—not much can be done about this other than trying to make everything surrounding the procedure go as smoothly and with as little stress as possible.

Dr Garcia Aguilar indicated that it will require at least 10 days inpatient care and then likely 2-3 months where I will be unable to sit, with the first month likely being particularly intense. AS such, we are going to need somewhere to stay near the hospital for an extended period of time—the realities of short term lodging in NYC means that this basically means a 30 day stay at an Airbnb—if we are lucky we will be able to find something that works for our family’s needs for between $6000 and 7000 for 30 days starting sometime in August. There will undoubtedly be other related expenses, but this is the amount I will be seeking to raise at this time.

I know its incredibly tough and tight times for everyone, and I hate the fact that I’ve made it all the way to 36 and I feel like I require a lot more support and generosity than I am able to give back to the world, but it is what it is, right? And I know that I know so many incredible and talented and successful and loving people out there, and in the end I’ve always felt that the outpouring of emotional support that accompanies especially the smallest donations has been absolutely critical to the resounding success of my ongoing medical odyssey.

FURTHER DETAILS BELOW

In 2017, after nearly 15 years of horrible ulcerative colitis I finally had the vast majority of my colon removed and have lived with an ileostomy bag since then—again, a massive, night and day transformation in my quality of life. The bag is certainly not without its own fair share of drawbacks, but the relief from the unrelenting & devasting gut was immediate and incredible. I felt better than I had in 15 years (despite the fact that I woke up inside the OR with failed IV…but like most of these things, that’s a story for another time!).

At that time we left in about 6 inches at the very end, including my rectum and colon. Nominally this was to preserve the future potential of a “j-pouch” reconnection surgery at a future time, but going into it I knew that was unlikely: in addition to the colitis, I also had experienced an absolutely overwhelming overgrowth of polyps and precancerous changes, so it was all going to have to go eventually. Nevertheless. removing those final bits and pieces would also have entailed a much more complicated surgery and healing process. There was no imminent pressure to remove it, so we planned to go back in a year or two after I was fully recouperated.

Needless to say, since then my body has been keeping me quite busy, as I had another super super super rare autoimmune skin disease, Pyoderma Gangrnosum, then a triple reccurence of a super rare skin cancer, Sebaceus Carincoma, as well as having had all of my top and bottom teeth removed and replaced with full dentures. (Although I’m pretty sure I never had COVID*—knock on wood!)

I then spent the last year getting an extensive consult at NY Columbia Presbyterian about the potential of a surgery to offer an alternative to the ileostomy bag known as Koch pouch; the specialist surgeon (one of only 3 in the US) there believed it was best to combine it with the removal. Ultimately, I decided it would not be wise for me to attempt to combine the two procedures; this does not necessarily mean the door is entirely closed for the future or that some of the other alternatives in development may not be options in the future.

After my most recent consult that was revealed to be a most prudent choice, as it was made clear that although the procedure itself should be relatively straightforward (although still likely 4-6 hours), the recovery is going to be quite extensive (as shared earlier) .

So I guess that’s mostly it. Once we know we can secure the lodging, we will get a final date, book the lodging, and then schedule the whole host of pre-op appointments over the preceding 30 days. But until we know that I will have somewhere safe and comfortable to heal, we are in another holding pattern….

(*Although I did get QUITE sick in January ’20 after literally being sneezed on by someone in a passing Taxi in NYC…)